The Colon Club

I am going to be starting 6 rounds of folfox soon. I would like to know peoples experience on it good/bad, side effects short and long term.

I kept a journal which was very helpful. My reactions and and how i was feeling energy wise followed a similiar pattern after each treatment so it was helpful in planning my kids and work schedules.
My hair thinned but didnt all fall out so a layered haircut hid it, I had sensitivities to cold drinks or touching cold for a few day (watermelon is a good hydration. I went thru chemo during the summer as well) wear a hat in the sun and reapply sunscreen often or you will burn very fast, the mouth sores were difficult but my oncologist gave me a numbing liquid that helped and I decided what I wanted to eat on a day by day basis. The best advice I got was one day at a time dont look at treatment as a whole but individual days otherwise its easy to get overwhelmed. You can do this!

I’m not going to sugar coat it, it’s terrible, probably the worst I’ve done. Eat when you can, sleep as much as possible, keep warm water on hand. The Oxi works very well but there is a price to pay for it, and remember the side effects are also cumulative, it just gets worse. You can do it, just tell yourself there’s only a few infusions left.

My husband did 12 rounds of it. His worst days were day 4 and 5 of each cycle. He had numbness on his feet and finger tips and sensitivity to cold. He had almost every warned side effect, but it was all very manageable and it all resolved within several months after his last cycle. With the exception of those days 4 & 5, he was able to function almost normally.

My advice is to drink a lot and often. Make protein drinks to be sure you maintain a good calorie count and that you get plenty of nutrition which will both help you feel better. Get plenty of rest. You can do this, just take it one day at a time and before you know it, your walking in for your last dose.

The one good thing is that you are Stage II...the second is that you are taking the new protocal of 3 months (6 cycles) instead of 12. Researh states that the new protcol lessens side effects... https://www.healio.com/hematology-oncol ... lon-cancer

Pyro wrote:I’m not going to sugar coat it, it’s terrible, probably the worst I’ve done. Eat when you can, sleep as much as possible, keep warm water on hand. The Oxi works very well but there is a price to pay for it, and remember the side effects are also cumulative, it just gets worse. You can do it, just tell yourself there’s only a few infusions left.

I didn't have quite as much trouble with it, and actually found that my cycles 6-13 were easier than cycles 1-5. (In between those, I had a chemo break due to an infection, and it may have been that I was just stronger after that than I was when I started treatment.)

The Oxi in particular I found to be cumulative. But I got laser treatments at my acupuncture sessions, and that seemed to help somewhat, I don't think the Oxi hit me as hard as it has some people. My last 5 cycles have been without Oxi - and I haven't missed it!

One thing that helped tremendously was getting fluids to stay hydrated. Northwestern allowed me to work with a home nurse to handle those so I didn't have to come in for them, and she taught us how to do it ourselves. I do a bag or two of fluids after I disconnect (like one bag Wed right after disconnect and one Thurs or Fri); and then if I am not feeling great I go back to Northwestern the following week and have them access me for a few more. This is particularly helpful if I have to fly for any reason. If your center will allow you to manage your own disconnect, doing fluids is not that much harder!

I think everyone reacts differently to it so it’s hard to know what to expect. Besides thinning hair and some exhaustion toward the end, my mom’s 8 rounds were really nothing too noteworthy in her words.